What is living with lupus like?

Having lupus can make everyday life challenging. When your lupus is active, symptoms like joint stiffness, pain, fatigue, confusion, or depression can make simple tasks difficult — and sometimes impossible. Since these symptoms aren't visible, the people around you may have trouble understanding how you feel.
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Can I live a normal life with lupus?

Many people with lupus can minimize flares, lessen the burden of the disease and live a quality life by following their treatment plan and taking care of themselves. In fact, nearly 90 percent of people with lupus live to a normal life expectancy.
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What a lupus flare feels like?

Living with Lupus

There are warning signs that the body will use to communicate that a lupus flare is coming, such as tiredness, pain, rash, stomachache, severe headache and dizziness.
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Is it hard living with lupus?

Living with lupus can be hard, but a positive outlook is important. You can do several things to help you live with lupus. A good place to start managing your lupus is to work with your doctor and take your medications as directed. At times, you may feel sadness and anger.
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How do you feel when you have lupus?

They may be painless, or you may have soreness or dry mouth. Prolonged or extreme fatigue. You may feel tired or exhausted even when you get enough sleep. Fatigue can also be a warning sign of a lupus flare.
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Living with Lupus: a patient perspective



What should lupus patients avoid?

5 Things to Avoid if You Have Lupus
  • (1) Sunlight. People with lupus should avoid the sun, since sunlight can cause rashes and flares. ...
  • (2) Bactrim and Septra (sulfamethoxazole and trimethoprim) Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. ...
  • (3) Garlic. ...
  • (4) Alfalfa Sprouts. ...
  • (5) Echinacea.
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What are the top 5 signs of lupus?

Lupus facial rash
  • Fatigue.
  • Fever.
  • Joint pain, stiffness and swelling.
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body.
  • Skin lesions that appear or worsen with sun exposure.
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods.
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Does lupus change your personality?

People with lupus may experience unpredictable changes in moods and personality traits. This can include feelings of anger and irritability. These may be related to the disease process or, in some cases, the use of corticosteroid medications.
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How can I live my best life with lupus?

Living with lupus
  1. Learn how to tell that a flare is coming.
  2. See your doctors regularly.
  3. Reduce stress by setting realistic goals for yourself.
  4. Limit the time you spend in the sun and in fluorescent and halogen light.
  5. Choose healthy foods most of the time.
  6. Get enough sleep and rest.
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Does lupus qualify for disability?

For Social Security's purposes, lupus qualifies as a disability when it meets these conditions: It involves two or more organs or body systems. It includes at least two major signs or symptoms, such as severe fatigue, fever, malaise, and involuntary weight loss.
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What are the top 10 signs of lupus?

Top 10 Most Common Lupus Symptoms Include:
  • Achy or swollen joints (arthralgia)
  • Unexplained fever (more than 100° F)
  • Swollen joints (arthritis)
  • Prolonged or extreme fatigue.
  • Skin rash, including a butterfly-shaped rash across the cheeks and nose.
  • Pain in the chest when breathing deeply (pleurisy)
  • Hair loss.
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What are the 11 symptoms of lupus?

Eleven common symptoms of lupus include:
  • Extreme fatigue.
  • Joint pain or swelling.
  • Swelling in the hands, feet, or around the eyes.
  • Fever.
  • Headache.
  • Sensitivity to light.
  • Chest pain when inhaling deeply caused by inflammation in the lining of the lungs.
  • Butterfly-shaped rash on the cheeks and nose.
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Do you gain weight with lupus?

Muscle pain — Muscle pain or tenderness is common in people with lupus; rarely, some people also notice muscle weakness. Weight changes — Lupus can sometimes cause weight loss or weight gain.
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Is lupus a terminal illness?

With close follow-up and treatment, 80-90% of people with lupus can expect to live a normal life span. It is true that medical science has not yet developed a method for curing lupus, and some people do die from the disease. However, for the majority of people living with the disease today, it will not be fatal.
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Does lupus get worse with age?

With age, symptom activity with lupus often declines, but symptoms you already have may grow more severe. The accumulation of damage over years may result in the need for joint replacements or other treatments.
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How serious is lupus?

Lupus can impact many different parts of your body. It can cause aches and pains, as well as serious complications to your major organs. Because lupus is an autoimmune disease, it causes your body to attack itself. This can lead to organ damage over time.
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Do you ever feel good with lupus?

Life with lupus can be difficult at times, but it doesn't have to stop you from doing the things that matter to you. Many people with lupus live happy, active lives — and you can, too.
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What foods trigger lupus flare ups?

Alfalfa and garlic are two foods that probably shouldn't be on your dinner plate if you have lupus. Alfalfa sprouts contain an amino acid called L-canavanine. Garlic contains allicin, ajoene, and thiosulfinates, which can send your immune system into overdrive and flare up your lupus symptoms.
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Is walking good for lupus?

In general, people with lupus get the most and longest-lasting benefits from low-impact exercises such as swimming, walking, yoga, or stretching. Keep an Exercise Journal. Exercise journals have multiple benefits.
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Does lupus affect your thinking?

Many people with lupus sometimes have confusion, memory loss, and trouble expressing thoughts. The medical term is cognitive dysfunction. These symptoms can come and go. Lupus brain fog can be frustrating, but you can learn to live with your symptoms and improve your quality of life.
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How does lupus affect the mind?

Lupus and its treatments can impair mental & emotional health. 80-90% of people with lupus. Neuropsychiatric lupus describes feelings of depression, headaches, and lupus fog — trouble thinking or remembering due to lupus. 25% of lupus patients experience major depression and 37% have major anxiety, research shows.
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Does lupus get worse with stress?

Living with lupus can be stressful. And stress can trigger your lupus symptoms or make them worse.
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What is the first stage of lupus?

Joint and muscle pain is often the first sign of lupus. This pain tends to occur on both sides of the body at the same time, particularly in the joints of the wrists, hands, fingers, and knees. The joints may look inflamed and feel warm to the touch.
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Does lupus make you sleep a lot?

Lupus and Fatigue. Fatigue is a very common complaint among those living with lupus. HSS Rheumatologist, Dr. Jessica Berman indicates that research estimates 40% of lupus patients have persistent severe fatigue, meaning that the fatigue stays for a long period of time.
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What was your first lupus symptoms?

Fatigue, fever, joint pain and weight changes are usually the first signs of lupus. Some adults may have a period of SLE symptoms known as flares, which may occur frequently, sometimes even years apart and resolve at other times—called remission.
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